Why we need to start treating ME much more seriously

An engineer and a keen squash player, he started to feel unwell and got progressively worse over several weeks until he felt dreadful — in his own words, “dead on my feet”.

Months later, a consultant diagnosed David with post-infectious fatigue syndrome, now called ME/CFS. Developing the illness — extreme exhaustion, headaches and aching limbs — forced him to leave work at the age of only 29 and return to the family home near Kirkcaldy.

The GP’s assurances that he would “recover with time and rest” kept him going for a while, but as the months wore on, he began to realise that he was in for the long haul. And what a haul it’s been. Thin, drawn, unable to work, and largely confined to home for two decades, David says: “I’ve learned to cope, but coping is not a cure. And without my family’s support I don’t know where I’d be.”

You rarely hear about the Davids, yet it’s estimated that about 20,000 people in Scotland have ME/CFS. The condition is characterised by physical and mental exhaustion following even moderate exercise, but most people also have muscle pain, gastrointestinal problems and recurring flu-like symptoms, and a significant minority are house or bedbound. Diagnosis is usually made after the most common alternative diagnoses, like cancer or diabetes, have been excluded. However, for many a diagnosis is only the start of their problems. They have been given a label for which there is no known cause, no specific treatment and an uncertain outcome.

Indeed, new patients, rather alarmingly, find two black holes awaiting them. The first is lack of credibility. The enduring stigma of “yuppie flu” and confusion with general tiredness means the public perception of ME/CFS is poor. Patients’ families can, therefore, be unsympathetic, as can doctors. Indeed, studies show that roughly half of GPs don’t believe the condition actually exists.

This is in spite of official and authoritative confirmation that the condition is genuine. The World Health Organisation classifies post-viral ME/CFS as a neurological illness. NICE states that symptoms can be just as disabling as multiple sclerosis, congestive heart failure and other chronic conditions.

The second black hole relates to treatment. Since the underlying causes of the illness remain unresolved and no treatment exists, prescriptions are given for particular symptoms, such as chronic pain or sleep problems. This can cause patients to become disillusioned, and many tell me they have not seen a GP for many years, preferring to struggle on alone rather than face what they see as a lack of understanding.

Failure to appreciate the serious nature of the illness coupled with a lack of specialist knowledge about ME/CFS is not only distressing for sufferers, it impacts directly upon their quality of life.

This situation could be transformed if Scotland had an ME/CFS centre of excellence. This would give GPs a place to refer patients in the early course of their illness for expert neurological and biomedical assessment. This is essential for a proper diagnosis since we know from studies in England that about 40% of people diagnosed by their doctors end up getting alternative treatable diagnoses (e.g., muscle, connective tissue, endocrine disorders, sleep apnoea, depression and anxiety) at specialist ME/CFS clinics. Moreover, the centre would house professionals who have a detailed knowledge of the condition and could refer to other specialists and receive reports back, creating over time a large reservoir of clinical expertise.

Importantly, it would also provide a validated “research resource” of properly diagnosed patients (something that doesn’t exist at the moment) contributing to investigations into the origin of the condition across the world which would, hopefully, ultimately lead to treatments.

We see a similar model working successfully in the ME/CFS service serving the north-east of England. Based in Newcastle, it’s linked to world-class research facilities at the nearby university. Government willpower and backing would be required for a similar facility in Scotland, and is, I believe, long overdue.